How might we design a palliative care model for people with brain tumors AND their care partners?

1st: Define quality of life (QoL)

This study used Twitter to better understand how people facing brain tumors define QoL.
#btsm #hpm #hapc #medthread

https://doi.org/10.1093/nop/npaa043 /1

WHY DID WE DO THIS?

Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients AND care partners.

DYK: Stakeholder engagement in research can inform research priorities?

#btsm #hpm #hapc /2

For this work, stakeholders included: patients, care partners, researchers, palliative care & neuro-oncology clinicians, advocacy group leaders, & payer representatives. ALL THE STAKEHOLDERS!

BIG QUESTION: Can engagement via social media complement in-person stakeholder panels?

In this paper we:

Describe the use of Twitter to complement in-person stakeholder engagement, and

Report themes derived from qualitative analysis of tweet chats about QoL needs and palliative care opportunities for brain tumor patients
#btsm #hpm #hapc /4

We used Twitter to engage the brain tumor ( #BTSM) & palliative care ( #HPM) stakeholder communities via tweet chats:

#BTSM chat focused on defining & communicating about QoL

#HPM chat discussed communicating about palliative care for those facing neurological conditions /5

FINDINGS 1
Content analysis identified themes, which showed:

QoL for brain tumor pts & care partners includes psychosocial, physical & cognitive concerns

Biggest concerns: behavioral changes, grief over loss of identity, changes in relationships, depression, anxiety /6

FINDINGS 2

Brain tumor patients & care partners appreciate when providers discuss QoL EARLY in treatment
They emphasized the need for care partner support
They said communication about QoL & palliative care rely upon RELATIONSHIPS to meet evolving patient needs
#btsm /7

MY FAVORITE THEME:
“QoL is defined by the individual, may evolve over time, and is important for everyone—not just those with a terminal diagnosis or nearing the end of life.”

Meaning: As you move through phases after diagnosis, what QoL means TO YOU changes too.
#hpm #hapc /8

WHAT DOES IT ALL MEAN?

Through tweets, #BTSM & #HPM ( #hapc) Twitter stakeholders outlined how, in addition to providing neurological and symptom management, THERE IS A NEED for specialized palliative care for brain tumor patients. /9

DISCUSSION:
Specialized palliative care may address unmet psychosocial & informational needs for #BTSM patients & care partners

Twitter was helpful for engaging stakeholders, informing research priorities, understanding stakeholder perspectives on QoL & palliative care /10

PERSONALLY: I can’t wait for the full paper to be online.

The supplemental material (w/tweets!) provides so much more context.

THANK YOU to all of the #BTSM & #HPM community members who participated and approved including their tweets in the paper (you know who you are). /11

Personal reflections:
to mystery reviewers 1, 2 & 3
to @neulpt @MichaelDFratkin @rfberry for
to the cancer hashtag & #medtwitter communities for your openness
#btsm #bcsm #lcsm #mmsm #ayacsm #gyncsm #pancsm #leusm #hpm #hapc /fin

Hey @lisaoleary524 and @mrsadamhayden: This is for you. #btsm